Factors Implicated in the Prevalence, Phenomenology and Impact of Anxiety Difficulties in Children with Autism Spectrum Disorders and Their Families

Background:  It has been estimated that, depending on the assessment methodology used, 11-84% of children with Autism Spectrum Disorders (ASD) experience high levels of anxious symptomatology (Kim et al., 2000; White et al., 2009). Rates reported for anxiety disorders in ASD appear to be higher than those in typically developing children, children with non-ASD learning difficulties or children with language disorders (Gillott et al., 277; White et al., 2009; MacNeil et al., 2009). It is also thought that the nature of worries, fears and anxieties is likely to differ between children with and without ASD (i.e. Evans et al., 2005), but it is not yet clear how or whether specific factors related to ASD contribute most to this increased vulnerability to anxiety.

Objectives:  The purpose of this study is to examine, in a large community sample of youth with ASD, the distribution, severity, nature and impact of anxiety difficulties in children and young people with ASD and their families in relation to a number of ASD-related factors including age, level of functioning, social skills, repetitive behaviours and interests, severity of other behavioral or emotional difficulties and experiences of bullying.

Methods:  A large sample of 6-18 year old Singaporean children with a diagnosis of autism, ASD, Asperger syndrome or Pervasive Developmental Disorders-Not Otherwise Specified (PDD-NOS) and their caregivers were recruited from the community. Currently, 109 participants have completed the study. Data collection is ongoing and will be completed in February 2012 with an estimated total of 200-250 participants. Caregivers completed a number of standardized questionnaires on anxiety, autism severity, adaptive behavior and other behavioral difficulties (Spence Children’s Anxiety Scale, Spence, 1997; Developmental Behaviour Checklist, Einfeld & Tonge, 2002; Scales of Independent Behaviour-Revised, Bruininks et al., 1996) and a questionnaire developed for the purposes of the present study. A smaller subgroup of participants who reported high rates of anxiety were followed up in focus groups to further explore the nature and impact of anxiety on the child and the family.

Results:  Data collection is ongoing and will be completed in February 2012. This paper will present findings on the developmental presentation of anxiety symptoms in children and youth with ASD, the effect of diagnostic group membership, level of functioning, ASD severity, social skills deficits and repetitive behaviours and interests on the rates and nature of anxiety symptoms. The impact of anxiety on the youth themselves and their families over and above the impact of ASD will also be discussed based on information obtained from the follow-up focus groups with a smaller subsample of the larger study.

Conclusions:  There are very few large scale community based studies of anxiety in ASD. Findings from this study can increase our understanding of how anxiety difficulties present and impact individuals with ASD and which ASD related factors are mostly implicated in increased rates of anxiety in this group. Such knowledge can contribute to improving assessment procedures and intervention efforts in anxiety in youth with ASD.